Life After Brain Injury: The Better It Gets, The Better It GetsAs a brain injury survivor,  I watched the ABC 20/20 interview of Gabrielle Giffords and her husband, Mark Kelly, with great interest.  Giffords, an Arizona congresswoman, was shot in the head at point-blank range on January 8, 2011, at an open-air meeting with constituents held in the parking lot of a supermarket near Tucson. Jared Lee Loughner, stood three feet from the congresswoman and shot her above her left eye.  He, then, turned the gun on the crowd killing six and wounding 13 others. Loughner was arrested on the scene and has been found mentally incompetent to stand trial for his actions.

Mark Kelly began videotaping Giffords’ recovery.  He wanted to show her what she had been through and to show others what was possible with determination and therapy.  The earliest tapes show a woman with a shaved head, fresh scars zigzagging across it, staring blankly through distant eyes, not able to speak and struggling to follow simple commands. The interview ends with a smiling, vibrant Gabby, remarkably just 10 months later.

While she can speak now, she communicates throughout the interview by mostly repeating one or two-word phrases not yet being able to string words together to make fluid sentences.  Because the bullet went through the left side of her brain, movement and coordination were seriously impaired on the right side of her body.  In the special, we see her walking stiffly with a slight limp and having some use of her right arm and hand. This is extraordinary progress in just 10 months.

She spent 5 months in the hospital undergoing rigorous therapy which continued upon leaving and persists today.  The videos documenting her progress show her learning to walk again by taking her first steps while holding onto a shopping cart with a therapist moving her right leg.  It shows 2 therapists assisting her and one playing the guitar and singing to provide rhythm as this has been found to aid in relearning movement.  Music has played a very large part in her whole recovery process.

We see various therapists working with her as she learns how to nod, sigh, pucker up and speak again.  We see her try to find the word for chair and say spoon.  We see her say chicken when the word she is trying to retrieve is watch.  We see her cry tears of frustration and anguish.  While mine was an ABI (acquired brain injury), a closed head injury, and not nearly as serious as Giffords’, I can relate to all of it.

I enthusiastically applaud Giffords and her husband for detailing this journey so intimately and realistically and for making it public. Recovering from a brain injury is not pretty.  It is grueling, hard work, for sure, but with determined, persistent effort…and, I mean every day, for years…anything is possible.  Mark Kelly, a retired astronaut, says they have a saying around NASA that the sky is not the limit.

What Giffords has demonstrated with her astounding progress is that the brain has an amazing ability to heal itself.  A brain will make new connections, even utilizing completely different parts of the brain, to accomplish functionality if the original area is damaged beyond use. This is known as neuroplasticity. Neuroplasticity refers to the ability of the brain and nervous system to change structurally and functionally as a result of input from the environment.

This ability of the brain was discovered and has become well known and accepted over the last decade.  Neuroplasticity has broad ramifications for improving the functioning of brains in many situations ranging from depression and mental illness to addictions and injuries.  It is my opinion that Gabrielle Giffords was very fortunate to have medical professionals and therapists who were knowledgeable about and utilized the latest brain therapies incorporating this and other relatively new scientific information.

Not once, in the traditional medical community, did I receive any therapy based on neuroplasticity.  There was no one playing the guitar and singing. It was not until I started seeking out alternative therapies on my own, paying for them out of my own pocket, that I even heard the word or encountered professionals who understood and employed the concept.  I gave Norman Doidge’s book about neuroplasticity, The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, to my neurologist and told him that he needed to read it.

While I am thrilled for Gabby and am very appreciative that her and her husband are educating the medical community and the public through making her recovery process public, her experience with the medical community, in my opinion, is no where near the norm that the average citizen in any town, USA, experiences after a brain injury – even with good insurance.  I experienced otherwise and have heard many, many similar stories.

In my recovery process, I read everything I could get my hands on to learn how to consciously direct and encourage neuroplasticity, and devised my own therapies to take advantage of it.  I got downright pissed off and obsessively determined telling myself that “I AM NOT STAYING LIKE THIS!” From the time I got out of bed in the morning until the time I went to bed at night, for years, my focus was on doing everything that I could do to rebuild my brain.  It has taken over four years, but I have recovered miraculously, far surpassing what the medical experts predicted.

I read one article, Putting Gabrielle Giffords’ Recovery In Context: Brain Injuries Vary Hugely, which expressed a legitimate concern that Giffords is going to become the poster child for brain injuries giving people unrealistic expectations for rehabilitation.  The article stressed that each brain injury is unique with many variables affecting recovery outcomes.  While it is important to be realistic, it is also very important not to take away anyone’s hope or motivation.  I have heard way too many accounts of the medical community making pessimistic predictions too often.  They can be self-fulfilling prophecies.  The medical experts simply do not know what the future holds, and, I think, it would benefit everyone if they just said so and stayed open to possibilities.   David Ben Gurion said that “In order to be a realist you must believe in miracles.”

A blog to which I subscribe, Aphasia Corner, stated that while Giffords’

promising progress was nothing short of miraculous, ABC News did a disservice to the almost two million Americans who suffer from aphasia, the communication disorder brought on by traumatic brain injury or stroke, from which Giffords suffers. Not once was the word aphasia mentioned.” 

I have aphasia.

I would like to emphasize that, no matter how educated and innovative the medical professionals and therapists may or may not be or what other variables may be present, an individual’s recovery is up to them. Gabrielle Giffords is a shining example of this.  In my opinion, she is nowhere near finished with her recovery process.  She has barely even started.  I recovered the most significant in my third year. The better it gets, the better it gets.

17 Comments

  1. Judy M. Hampton Reply

    My Darling Daughter, your account of your journey leaves me with tears in my eyes. As I witnessed your determination that you call obsessive, I was awed by your courage and unfailing belief that recovery was possible and that “the sky is not the limit !” Your continuing exploration of the limitless possibilites is so inspiring to others, including me, who deal with their own challenges, whatever they may be. I am so proud of you and your accomplishments. Love, Mom

    • Debbie Hampton Reply

      Thank you for kind words and support along the way. As you express, the same attitude can be applied to any challenge by anyone. No brain injury required! Life is what an individual makes of it, in all cases.

  2. Good points Debbie. Like you said in your comment above, these same thoughts on attitude can be applied to recovery or any situation really. It takes a lot of courage by the person suffering a brain injury or other life challenge to overcome it. I would imagine having the support of friends and family is also helpful to the recovery process?

    • Debbie Hampton Reply

      Yes, immensely. I was so happy to see Mark Kelly’s support, encouragement and involvement in Gabby’s recovery. In this situation, as any challenging one in life, it is ultimately up to the individual, but it sure helps to have a hand to hold. While I did have a few emotionally supportive people in my life, I very much had to go this journey alone doing my own research and carving my own path. However, this ultimatley was a good thing because now I feel like there is nothing I cannot handle!

  3. As moving as I found this post, it was the note from your Mom that put me over the top. How blessed you are to have one another! And how lucky I am to have found you in the Twittersphere so that I get wonderful posts like this one delivered right to my inbox. Thank you for sharing your experience, insights and knowledge so generously!

    • Debbie Hampton Reply

      Deborah (I am one too!), thank you for stopping by and for contributing with your positive words. Actually, my mother and I did not have a very good relationship when all this happened. She was not around much right after my brain injury. Over the years, through this challenge and her subsequent cancer, we have pulled together, gotten closer and have been tremendous support for each other.

  4. Debbie,

    I have witnessed for myself your progress in the last two years..and in my opinion your determination as well as openmindness has made all the difference. You have constantly sought out and measured therapies what worked for you.
    You have also been an advocate during this time for all with similiar circumstances. I have witnessed myself because of my daughters autism and sons LD’s /ADHD your committment to educate and encourage others on “their own personal journeys”.
    I want to encourage you to not only continue what you do, but to double up your efforts ten fold (selfishly of course I do so) for each day you write or otherwise connect with someone; you do just what you said…. ” The medical experts simply do not know what the future holds, and, I think, it would benefit everyone if they just said so and stayed open to possibilities. David Ben Gurion said that “In order to be a realist you must believe in miracles.”
    Thank you for being our “local” miracle and advocate!
    In gratitude and love
    Angela

    • Debbie Hampton Reply

      Angela, thank you so much for your kind words. I like being the local miracle! 🙂 You know that I think I had a little help from beyond! It was uncanny how I happened upon the right things I needed at just the right time miraculously. Thank you for pointing out the open minded approach. I had not really thought about it before. I would try anything once to see if it helped, if it did, I continued even when the neurologist told me “not to waste my money.” I want to let others know that they can help themselves by being open and just seeing what is out there and trying it too. I want to let everyone know not to just rely on the medical “experts” and do not let them take hope out of the picture or predict the outcome. Each person is the expert for themself. If I can do it, others can too!

  5. I am inspired and fascinated by Ms. Gifford’s case, and by her progress. I am by yours too, Debbie, though I think of you more personally than as a case. I dislike the feeling that Gifford’s story has been heavily censored and controlled and presented only for maximum positive emotional effect. Your point about not mentioning aphasia is an example. They certainly don’t deal with the fact that her job is to be a legislator, and it’s only a two year term, and she isn’t (at present) qualified to do it.

    I understand her rehab team using her own desire to return to work as a motivator, but meanwhile the people of her district will remain basically under-represented. She should have resigned, or have been removed from office in favor of a special election, or the appointment of someone to complete her term. It isn’t being done because the “miracle story” obscures examination of this situation.

    I do hope she gets most of her abilities back though, however long it takes. Her Congressional health plan is better than what you and I could afford. That will help.

    • Debbie Hampton Reply

      Thank you, Mikey. I was not going to open that can of worms, but since you did…. I agree with you completely. She has NO business maintaining her role as congresswoman or even considering running for office again in my opinion. I say this because, let’s be honest, she is not mentally or physically capable AND because she needs to direct all of her energy and effort into herself and getting better without the stress and conflicting priorities that the job would bring. I do not know of her specific situation, but, I do know that when I was seriously brain injured, I tended to over estimate my capabilites in a bit of self denial and in an effort to mask my defecits to everyone else. I do not know if this comes into play here or not. I do believe Mark Kelly or her Mom or somebody should step in and tell her that she needs to concentrate on JUST her right now.

      Her situation is very unfortunate. She did nothing to bring this on herself, but neither do most of the millions of other brain injured people. They end up having to quit jobs and go on disability. How many jobs in the private sector would continue to let a person hold it and collect the salary when they are not doing it? I read somewhere that she missed like 98% of the votes. She needs to put her energy into her.

  6. Lee Staniland Reply

    Debbie you are so right in your thinking. It is the other people around her that are putting her thoughts out there. Or maybe not. Each injury is different ( I forget that sometimes, and just think of mine)
    But the whole thing is that if you can get all that great therapy and medical help, look what can happen. But then look at us! We didn’t have all of that and with a lot of stubbornest we have survived and can function better then most. Well all we can do is just keep pluggin on.
    Thanks Debbie for being who you are. and oh ya, families are a big part of it. Mine was GREAT!

    • Debbie Hampton Reply

      Lee, thanks for your comment. Yes, amazing things can be accomplished with and without the lastest therapy. I think you hit the nail on the head. It comes down to stubborness and determination and channeling it into your recovery. Thank you for your wonderful example and support!

  7. Debbie,
    I’m so amazed by your level of determination and discipline. Thanks for this article that accurately reflects what it’s like to recover from a brain injury as an ordinary citizen.

    • Debbie Hampton Reply

      It IS amazing what I can do when the quality of my life depended on it. What I have come to realize is that the quality of my life depends also on the little decisions I make and the things I do everyday. It is the same for everybody. Everyone has the same power to create their life. We just have to learn to use it.

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  9. > I AM NOT STAYING LIKE THIS
    I think that’s the place where so much powerful change comes from.

    Where there’s a will, there’s always always a way.

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